Nov 20, 2016: Looking Up


Last week was quite a bleak week, but this week was definitely looking up. Certainly, there were some rough patches, but there were a lot of good patches, too.

The first couple of days, I was still recovering from strep. Actually, I’m still recovering from strep. My throat no longer hurts, but I wake up every morning exhausted. I guess it just really knocked me for a loop. Hopefully a few more days will have me feeling completely back to normal. And the best thing of all was that I’m the only one in the house who got it! I don’t know how we got so lucky, but we did. I was terrified Sam would get it since he was all over my lap last Saturday (Chris wasn’t home, so I didn’t have much choice but to be in the same room with him), but somehow he was spared! Thank goodness.

And I was feeling quite a bit better by Tuesday, when I had to give an in-person presentation at the Genetics Department of a large area hospital. That deserves a blog post of its own, so I wrote one: click here if you missed it earlier this week!

I had another presentation Thursday, also to a group of geneticists, but this one was a webinar. I’ve never led a webinar before, but it was actually really easy! I think I’ll be offering that option to all the medical providers I talk to now. Medical professionals are very hard to get in one place at one time (not surprising, given their busy schedules), and with a webinar they can log in from wherever they are. It worked out very well—I was pleased!

Also in the vein of Down syndrome, I got some very exciting news this week! I’m co-chair of a group called the California Down Syndrome Advocacy Coalition (CDAC); we are about twenty people across the state who advocate for the rights of people with Down syndrome and their families. Our organization, it turns out, won a big award from the National Down Syndrome Society: State Advocacy Network of the Year! Which means that either I or my co-chair need to attend the awards ceremony to accept the award on behalf of CDAC. As it turns out, my co-chair will be 36 weeks pregnant at the time the award is being presented, and thus she cannot fly. So that leaves me.

Here’s the thing: The awards ceremony is in Washington DC. The award is being presented on Capitol Hill. That same day, we will be meeting with members of Congress on Capitol Hill. And here’s the kicker: It’s on Theo’s birthday.

Theo is obsessed with the government right now, thanks to the election and all it entailed. His class did a pretty in-depth study of how our government is structured and our election process, and he was utterly fascinated. So he is dying to go with me to meet the members of Congress! And children are indeed welcome—I will certainly be bringing Sam, since he is the reason why I’m part of CDAC! My co-chair attended last year (she won the award for NDSS Ambassador of the Year last year), and she brought her three-year-old (with Down syndrome) daughter and her six-year-old son with her to meet the members of Congress. (In fact, she and her daughter even filmed a spot with House Majority Leader McCarthy last year.) So having the kids accompany me is absolutely acceptable.

And what an experience! Honestly, Sam’s not old enough to particularly care. (He’ll just be glad if the hotel breakfast has bacon!) But Theo is old enough to care, and he’s old enough to realize that he is acting as his brother’s advocate when he accompanies me to talk to members of Congress. I think it’s an incredible opportunity for him!

Honestly, plane tickets were not in our travel budget this year. (We’re saving for the Great Small Family Road Trip of 2018!) But when I talked to Chris and wondered whether it was really something we should do, he said, “Are you kidding me? We are not missing this!”

So there you go. We’re not missing it. 🙂 At least, I hope not. I’m trying to get things in order now, since it happens to be on Spring Break week for many people, and thus prices are bound to go up. Right now, plane tickets aren’t too bad. It’s expensive for a family of four to fly, but it could be worse. And I’ve applied for scholarship funds to cover part of the hotel, which will be a huge help. I also told Theo that if we do go, it takes the place of any sort of birthday party, and he immediately agreed it was well worth giving up a birthday party for. The amount of money saved from even a very modest birthday party will probably cover a night of hotel, so that’ll be a help!

And as long as we’re flying all the way back there, you know we’re not missing a chance to pay a visit to my Aunt Sally, so we’re working in a day or two down there, too. Fingers crossed that it all comes together…but wow. It’s funny how things work out. Almost five years ago, I was wondering what my life would look like raising a son with an intellectual/developmental disability. I can’t say I had any idea that my life would include accepting an award on Capitol Hill. I’m really proud to be able to represent CDAC in this way—it’s a great group of people who work very hard for the future of our kids and their tribe!

We’ve got a rainy weekend here in California, so I can’t say we’re doing all that much. We did participate in Scouting for Food on Saturday morning, though no one in our zone had left any canned food out, so really we just took a drive around the neighborhood. Theo was incensed that people wouldn’t leave food out for the hungry, and he refused to believe me when I said that some of the people might have already donated all their canned goods to another food drive, since such drives are quite common this time of year! He wanted to go knock on people’s doors and ask why they weren’t giving us food. I’m sure that would’ve gone over well!

I also took Theo to the movies to see Fantastic Beasts and Where to Find Them, a spinoff from the Harry Potter series. I really enjoyed it. Theo would’ve liked more action, but I thought it was quite good!

Before I go, I’d like to share something really touching. This is the eulogy from Remy’s memorial service, which was held this week. His parents wrote it and had someone deliver it at the service, and then at people’s request, they shared it publicly. I think this is a beautiful tribute to their son; I cried when I read it. I share it with you because it includes a call to action that I think everyone can benefit from. I know I plan to not let Remy’s imprint fade.

Our son lived four, short, Earth years. But we know we cannot adequately measure his impact on us by using years as a concept of measurement.

We like to think Remy chose us as his parents. Two people who talked a lot about adopting a child with Down syndrome. Two people who have supported adults with disabilities for over a decade. Two people who have incredibly loving family and friends. He chose to be born into a family where Hazel would be his big sister. Who would guide, teach and take care of him from the moment they met. We believe none of this was by chance. He knew he would be celebrated and loved. And so it was.

A bright soul, brought into this world on September 18th, who struggled with some things, but never to capture everyone’s love. Immediately upon his arrival, he brought incredibly kind people into our life. Nothing by accident. Never a wrong person. Only the most loving, needed people each step of the way.

As he grew, so did his light and the circle of people who entered our family – our spiritual friends, our Rockin’ moms, our Gigi’s group, our Down in the Southland friends, therapists and teachers. Good people from all over the world became our deliberate family. All brought to us by Remy.

Truman joined our family a couple years later. If you saw him yesterday, you know he’s larger than life. He learned from the best. His big brother taught him so many things. Like how to color your belly button with permanent marker. And escape the yard by squeezing under the gate. We think Remy is still whispering in his ear. Mischief will never be looked at the same again.

We find our solace, our strength, in knowing that he has incredible gifts of love to offer the world. At such a crucial time. He is needed. We were his keeper for a little while. A powerful while. While we do feel sorrow, we also feel honored. Blessed. In awe. That we were entrusted with him.

Don’t let his imprint fade. Be kind to each other. Allow others to help you, and offer help where it is needed. Laugh at a good poop joke. Live with uncontained excitement. Draw people into your circle.

While we make room for grief and tears, we also ask that you too feel honored to be in Remy’s circle. Nothing by accident. We truly honor and love you all. And so it is.

And last but not least, pictures. The random ones from my cell phone, but also (if you’re diligent enough to keep scrolling!) our family pictures.

Fall color in our yard!

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Deck painting!

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The super moon from our neighborhood:

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I took him to City Hall, at his request, to report the angry pro-Trump guy who scared him. He got to talk to the police about it. He suggested they ought to be passing out fliers about this. 😉

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Cavatappi pasta with chard, butternut squash, and fried rosemary (which prickled the hell out of my sore throat, so I picked it out):

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Tofu burgers with oven fries. These were GOOD!

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Salmon with new potatoes and green beans:

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Soba noodles with butternut squash, cucumbers, radish, pumpkin seeds, and sesame seeds (very tasty!):

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My delicate eater, with pinkie gently raised while dipping:

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Roasted cauliflower and potato hash with fried eggs and watermelon radish salad (very yummy!):

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And now, a whole bunch of family pictures that our photographer took!



















































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